New models of follow-up in prostate cancer: a role for information technology?

Authors


Veronica Nanton, Warwick Medical School, University Of Warwick, Coventry CV4 7AL, UK. e-mail: V.Nanton@warwick.ac.uk

Abbreviation
NICE

National Institute for Health and Clinical Excellence

INTRODUCTION

The last 10 years have seen considerable expansion in the development and use of e-health interventions within the field of oncology [1]. Web-based and standalone applications now offer a wide variety of approaches that may facilitate monitoring, self-management and patient experience of the clinical consultation [2–4].

Men with prostate cancer in the UK have been relatively slow to benefit from the potential of technological and conceptual developments in e-health. While reliable data regarding these patients' use of the internet are lacking, a high proportion of men with prostate cancer fall on the wrong side of what has been termed the ‘digital divide’, an age-related barrier raised further by socio-economic status, that separates those who use or have access to computers and the internet from those who do not [5,6].

However, internet use amongst older people is expanding. For example, in the last quarter of 2011 the internet was accessed in the UK by an estimated 59.8% of those aged over 65 years and 29% of those aged over 75 years [7]. National strategies aimed at engaging older people with new technologies encouraged around 164 000 people aged >75 years to go on-line for the first time during a 3-month period [8]. Furthermore, evidence indicates older people are not averse to using computer-based health interventions they perceive to be useful, when they are designed with attention to age-related visual and cognitive styles and introduced in a manner regarded as friendly and encouraging [9–11].

Meanwhile, the organisation of prostate cancer follow-up is changing. After the publication of the 2008 National Institute for Health and Clinical Excellence (NICE) guidelines, increasing numbers of men are being monitored by clinicians in primary care, although there is relatively little guidance as to how this should be undertaken [12,13]. Secondary care-based follow-up has benefited in recent years from a range of innovations including the widespread use of clinical nurse specialists, telephone support and information prescriptions. Nevertheless, some concern over men's long-term experience remains, with continuing evidence of unmet needs particularly in relation to information and attention to psychosexual issues [14–16]. Primary care-based follow-up represents both a challenge and an opportunity to introduce and evaluate other approaches to best possible care for these patients. Despite the dearth of e-health applications in current service provision, such applications when developed with attention to the particular characteristics and needs of the prostate cancer population as well as the needs of clinicians, have the potential to play an integral role within these new models.

We have been involved in developing one such application. The Patient Information Aid (prostate cancer) has been developed through a series of studies in response to men's expressed information needs [17–19]. Its purpose is to improve patient experience through facilitating communication in the clinical consultation. Originally paper based, in questionnaire format and known as the Information Needs in Prostate Cancer Tool, the aid has been adapted for use on a touchscreen computer through an iterative process. Eight men from a multi-ethnic prostate cancer support association provided input about both form (font size and colour) and content (grouping and wording of questions). Usability, acceptability and feasibility of a modified version were tested in two further focus groups each with six patients, from diverse socioeconomic backgrounds. Men ranged in age between 60 and 82 years (mean 68 years, median 67 years). Participants used the aid prior to a discussion of their prostate cancer information needs and the relevance of the device to their own situation.

The touchscreen device was found to be self-explanatory and easy to use amongst men with different levels of experience with computer technology. The mean completion time was 10 (range 4–13) minutes. Those with no computer at home were slightly slower but did not show significant problems. The importance of receiving personalised information was reiterated by participants during the group discussions. The aid was seen as useful in helping to articulate particular information needs and in potentially focusing the consultation on such concerns. As one participant expressed it ‘they may be the questions we think about ourselves but on the screen it gives you a better perspective on questions you can ask about’. Another group member agreed, the aid might avoid the clinician ‘spending 10 min trying to get something out of you’. Several suggestions were made about ways in which it could be used, including completion on-line at home before follow-up appointments with a specialist or a GP. Acceptance of the potential value of the device led all men to express willingness to use it, regardless of age or previous experience of information technology.

The focus groups also identified scope for further development of the aid in order to reflect the range of concerns expressed by men over the long term. In addition, measures such as the IPSS and a psychosocial assessment tool delivered in a menu-driven format could be incorporated in to the touchscreen device. These would provide men with an opportunity to articulate the range of their concerns in a structured manner, thus enabling patient-driven and focused communication with clinicians. A program that generates specific actions to be considered or undertaken when particular needs are identified would facilitate and support primary care-based management and so encourage ‘clinician buy-in’. Further, web-based development would enable assessments to be completed on-line and in a range of languages. These would allow outcome data and PSA scores to be readily available to both secondary and primary care clinicians, thus enhancing communication, patient safety and contributing to quality of care. As primary care-based follow-up becomes more deeply embedded, such enhanced systems may allow an earlier transfer from specialist care for men after curative treatment with a stable PSA level, than the current 2 year lower limit currently recommended by the NICE guideline development group [12].

The acceptability of the aid to our sample group, as well as evidence of the success of e-health interventions in prostate cancer in Northern Europe [20] and the rapidly expanding use of technology amongst older people, underlines the potential of similar touchscreen or other computer-based devices in the development of primary care-based follow-up. The recent Department of Health strategy, ‘The Power of Information …’[21] has emphasised the importance of the creative use of information technology at a time of change and restructuring within healthcare, as well as demand for high volume and need for quality care. The potential of this technology to contribute to improvement in men's experience of prostate cancer deserves further exploration.

ACKNOWLEDGMENTS

We would like to thank the members of the prostate support associations who took part in the focus groups. Our thanks are also due to Julia Roscoe who led the focus groups discussions. The study was funded by a grant from the Eveson Foundation.

CONFLICT OF INTEREST

Jeremy Dale is Clinical Director of Avia Health Informatics PLC, a company which develops clinical decision support systems.